Possible consequences of genetic tests
Usually, genetic tests are quite complex. Besides providing medical information (Implications of negative test results for other family members? What is the best treatment? Is prevention possible?), we also pay attention to possible psychological, ethical and social consequences.
In the scheme below we listed some frequent dilemmas people are confronted with.
What are the possible consequences?
Can I live with negative test results?
Should I now inform all my family members?
Does this have consequences for my children?
What if my test results are good and those of my sister or brother aren’t?
Won’t my world view and portrayal of mankind change now?
Should I inform my employer?
Will I get enough support from my partner and family?
The impact of a genetic and often hereditary condition can hardly be overestimated and extends over many fields. Next to the direct effect on the patient himself or herself, such a diagnose often involves consequences for brothers and sisters, children and partners. In most cases, ethical and psychological components are attached to genetic diagnostics.
You could wonder why someone would want a genetic test. We learned from experience that some people do not want to be aware of a hereditary or health risk. For them, that is easier than knowing that there is a certain risk of falling ill sooner or later.
Two years ago, Martine got breast cancer. Genetic testing has shown that it regards a hereditary cancer type. She was advised to inform her brother and sister because they could also be carriers of this ‘genetic defect’. Martine is not used to talk about delicate matters with them. Her sister once said that she would not like to have preventive tests to be carried out (‘Ignorance is bliss.’). Martine now wonders if she should inform her sister or not. And if yes, what is the best way to tell?
It is a fact that the results of a genetic test inevitably add something to our knowledge: one is informed of something one wasn’t aware of before.
John is Robert’s son. John suffers from an incurable muscular disease (FSHD). It is a hereditary condition of which the gravity strongly differs from one person to another. John has the severe type of the disease and needs close medical attention. His father has no symptoms, but a genetic test shows that in fact he is a carrier of this abnormality. Robert feels very guilty.
Moreover, we may certainly not underestimate the burden caused by the test procedure. People might relive past emotions or feel lonely during this time.
As a child, Fran witnessed her mother dying from ovarian cancer. This loss was very hard to deal with. Meanwhile the family was diagnosed with a hereditary burden. Fran’s application to be tested opens old sores. She partly revives the events of the past.
Last updated: 10 December 2015 - 11:23
Copyright 2018 Center for Medical Genetics, Gent.